← Return to MAC: Anyone ever felt pain from MAC? So many questions

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@jr2366

Thanks for this update on what you were going through can I ask you what inhaler you were on because my pulmonologist has me in Arikayce through a small nebulizer that’s it once a day I’m in this for 6 days now I still do have pain which gets me nervous but it’s not really bad there were days I wanted to cry from the pain . I have been boiling my water that I drink because now I feel like I’m scared to drink anything eles I do drink bottled water . Have you ever heard of the medicine I’m on what do you think?

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Replies to "Thanks for this update on what you were going through can I ask you what inhaler..."

Jennifer –
I know we always want to think medicine will quickly make us feel better, but when it comes to MAC, "it's slow to grow and slow to go." I'm pretty sure my pain levels didn't diminish significantly until I was on the Big 3 antibiotics for over 4 months, and the wracking cough took at least 6 months.

It takes some time to come to terms with a long-term condition like bronchiectasis, and an infection like MAC, but you can learn to become cautious and not afraid. I think learning is the key – National Jewish Health (NJH) has a marvelous NTM/MAC & Bronchiectasis program, with an annual (I think) conference. Here are some learning videos from one a couple years ago: https://www.nationaljewish.org/ntmvideos2016

When first diagnosed 2 1/2 years ago, I was afraid to do anything without a mask, afraid to drink water or shower, afraid to open my windows, afraid to be around anyone who sneezed… Over time I have decided to live with Bronch and MAC in a more relaxed way – I take reasonable precautions like no hot tubs, turned up water heater, .2 micron water filter, mask when in garden working the soil… During Covid, my husband and I have lived in relative isolation – except for a select few isolating friends and our work-from-home, careful kids. We take every recommended precaution, and actually adopted routine mask-wearing before April 1st.

I also do regular lung clearance with 7% saline neb and Aerobika (vibratory lung clearance device), use Mucinex to keep secretions loose, use my asthma neb as needed. Both NJH and my care team believe the routine airway clearance is a critical component, and if I skip more than a day, I get lung discomfort still.

Sue

jr2366. Hi Jennifer. I have been taking Arikace for just over a year. Initially I was taking it every day and lost my voice completely so my pulmonologist suggested that I do every other day. After a week or so of that dosage my voice gradually came back.
As for the water, I was under the impression that it was inhaled droplets or mist that is dangerous, not something that is ingested, but if I am wrong then I hope someone here on the forum will correct me. I use my keurig every day! I do clean it with vinegar solution.
I was diagnosed with bronchiectasis and Mac several years ago. It was determined by my first pulmonologist that I was not a good candidate for the big three. I have heart rhythm problems. I have never had any pain with my Mac but I coughed badly for a couple of years before being diagnosed and had a couple of episodes of hemoptasis. I also have a hiatal hernia and sleep apnea and most probably aspirated the bacterial infection into my lungs.
This forum has been a Godsend for me. Though I don’t post often, I read everyday and have learned so much from the wonderful and caring people who share their health journeys with us all. You will learn so much from them.
Many blessings, Candy

Jennifer, I have no personal experience with Arikayce…others on this forum do though. When I asked my ID doctor about Arikayce, he said it “was very very expensive and given to patients that other treatment had not been possible/effective”. My inhaler is Breo 100mcg (it replaced my Asmanex). Why are you boiling your water?